Please post here for UCHL visits -

[Elastomer]

Thanks very much for all your replies and support x

In that case I'll make a list of my joint problems and ask for a referral to rheumatology and see what happens from there. I'm based in the Reading area, but am often in Oxford, so could easily make appointments there too. If anyone has any ideas of what treatment/support is like in those areas, I'd be really interested to hear.

Thanks again
x

[gg142]

Hello flexible people,

i need some help to understand how to go and get myself diagnosed by Prof G or someone of his stature in London. We have private insurance and my GP is willing to write a referall for a private reumatology visit.

I am fairly positive it won't be difficult to diagnose me due to my history and currently I have been having a lot of pain in my kneww when i bend and walk, so i thought this should work for having teh private insurance to pay for an "acute" condition (they really don't pay if you way it's pre-existing, we found that out the hard way).

I need to be diagnosed so that I can bring that in to my younger daughter's community peadiatrician, who is ignoring her hypermobility and claiming she has hypotonia of unknown origins. I want to bring up the family history in a relevant way, but also find ways I can keep my body from deteriorating and how to age nicely.

How do I get an appointment? did I miss a post? can you please send me a link or a telephone number? I will then call my GP and ask for the referall, get approval from the insurance and book the appointment.

THANKS SO MUCH!!
GG

[Blaadyblah]

http://www.hypermobility.org/clinics.php

[gg142]

thank you SO MUCH! I feel like a doorknob that I did not check there!
I let you know what I am able to schedule

[Blaadyblah]

This topic has masses of information too and is worth having a look through beefore you make your mind up. Best of luck.

[Chipchase]

Hi all,

After finding out yesterday that Dr 'Who I'm not allowed to say' (@ Manchester Royal Infirmary) Clinic list is closed for the time being and don't know if I made it or not until tomorrow, I am planning ahead and if I didn't then I'm heading off to UCHL I think.

Already seen 2 local Rheumatologist who where, shall we say, lost.....one sent me packing with a leaflet on JHS and the other discharged me on the grounds she didn't want to touch me with a barge pole due to my heart condition and pain relief but that's another story....so....

Does it matter who you see at the Rheumy Dept at UCHL for diagnosis and treatment plan, I know everyone wants to see Prof Grahame but there are others listed in the same department?

I was on the phone to the Rheumy Clinic at UCHL yesterday and the person I spoke to (Who called him 'The Prof' ) said we can't name who we want to see, we knew that, and could see anyone, so is it pot luck for those that do see him or does he choose who to see from the GP Referrals?

Thanks.

Claire
xxx

[catherine_h]

Hi

We went all the way to London to see Prof Graham and have to say it was well worth the visit.

My daughter is 16 and has been suffering for over 4 years with pain, dislocations, dizziness, stomach problems, and to be honest many other symptoms.

Our local doctors have not understood her condition, diagnosed her with Hyermobility syndrome, prescribed pain killer after pain killer and left us to get on with it. Amy has just got worse to the point she is practically housebond, she has no quality of life.

Prof Graham had time for Amy, he spent almost 2 hours with her and exlained her pain and symtoms, he diagnosed her with POTS and Ehlers Danlos Syndrome. Amy left the appointment feeling like she wasnt going mad and that somebody understood her.

He said he would put a management plan in place and that if treatment couldnt be found in the North he would find it in London.

We all left the appointment feeling a little more positive but now with a lot more questions about Ehlers Danlos and POTS, how to get Amy the right treatment and the types of consultants Amy needs to see and where. Trips to London would be very expensive but we will find a way.

Does anyone know who we can see in the north for Ehler Danlos, Pots and stomach/bowel problems?

Thanks

[Rosie]

Hi

Catherine - glad to hear it went so well for your daughter. Try asking about POTS and the gastric problems on the relevant threads please so that we can keep this thread about UCHL.
Thank you

Rosie

[juliepops]

Does it matter who you see at the Rheumy Dept at UCHL for diagnosis and treatment plan

Because of a mix up at UCHL I ended up being put onto another consultants list ( rather than wait a very long time for Prof G).
Firstly I saw one of the Doctors on the team and than the consultant came in to see how we were doing. I had had a bad experience with a local Rhuemy and was very unsure when I arrived.
I must say I had a very positive experience. The impression I got is that the rheumy teams at UCHL are passionate about doctors being knowledgable about HMS. The consultant said that all rhuemy specialist are training how to deal with HMS and she wished other hospitals would take this on board. I was then reffered to Stanmore and am waiting to do 3 wks rehabilitation.

So for me seeing someone other than Prof G was brilliant with a positive outcome.

Good luck in what you decide to do
Julie

[bexley]

I agree with you Julie , I saw Dr. Kaz Kaz instead of Prof. Grahame and was apprehensive about going , not only because I. like you had a bad experience with a local Rheumy , but because I didn't want to get my hopes up to have them dashed as they have so many times before. My appointment was on time , I felt that she really listened to what I said and asked some of her own appropriate questions as well . She questioned my understanding of Hypermobility and then went through a plan of action with me . Whilst waiting apprehensively for my report back from her ( I had other bad experiences with Doctors not quite sticking to plan) I was relieved and immensely pleased as , she had done exactly what we had discussed. I have yet to see my GP for a follow up about this , but it has made me feel a lot more confident in going to see them and being able to ask for the appropriate help and services. I'm sure Prof. Grahame doesn't have just anybody on his team and as a very sought after consultant , can only spread himself so far , so don't be put off by seeing somebody else

[barkingmad]

Hi Claire,

The information you were given is correct. Due to a high demand it is becoming very difficult to refer patients directly to Prof G or Dr KK. but all other medical professionals in the team are positive in their understanding and management of HMS and technically are under the supervision of Dr KK and Prof G.

[sheppeyescapee]

I saw a different rheumy at UCHL and they were better than the hypermobility specialist in bath They got all the appropriate referrals done for gastro, autonomic and stanmore that bath wouldn't do. So yeah the training does seem to be working

[PinkyParty]

Hello all!

I had an appointment with Prof G yesterday (Thursday 26th) for the first time and I feel much better after seeing him. He is a lovely man and it's nice to actually have sat down with someone and gone through everything that's been affecting me all my life! I have finally got an official diagnosis of JHS and EDS. I have also been diagnosed with POTs as well which did come as a surprise to me so I've been looking it up just to see what it is properly. I finally have something I can tell people and be able to describe with it is!

Hope you're all well!

[andreak]

We have just been offered an appointment to see Dr Kazkaz at UCLH on 1st June.... Professor Grahames clinic was fully booked until October and we want a joined up strategy for managing my daughters HMS etc
Alison has EDS HMS, Complex Regional Pain Syndrome (with dystonia and movement disorders), POTS and Scheuremanns
We are currently under several specialists and there seems to be no coherant strategy. The medication for POTS cannot be taken with the medication for Scheuremanns, some physio can induce faints etc.
We are hoping that UCLH can look at everything and give us a joined up plan of how to manage the conditions in the future. At the moment things are pretty stable but when one of the conditions flare it seems to impact significantly on the others for a while and things get pretty bad.
Am I right in thinking that UCLH would be able to advise on this. From what I have read I am a little worried going when we already have a diagnosis but from what I have read Prof Grahames clinic is one of the only places in the UK to look at links between all of these conditions. Locally we were referred to Bath and offered a place on the CBT programme but couldnt go as my partner was off work long term sick and my daughter couldnt attend alone. As I couldnt give them a clue as to when we could travel the offer was withdrawn so would Stanmore be a possibility???
What can we expect at the appointment, do we need to bring anything or prepare questions.....
Any advice would be welcome
Thanks
Andrea

[andreak]

Further to my question about UCLH and Dr Kazkaz can anyone tell us how long the appointment is likely to ask
My daughter wantes to go to Madame Tussauds afterwards and we have to book a specific time slot for entry and need to allow time
Many thanks
Andrea x